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What I am up against: Still standing?

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    What I am up against: Still standing?

    Nausea has been intense for about 10 days, no vomit, waves throughout the day. Today was the worst. Shovel food in as can. Am on Protonix 2x day for months, zofran 4x day for months. GI doc added oTC Gaviscon extra strength.

    This week will do a stomach X-ray and a gastric andmotility exam. I guess looking for Gastroparesis or other causes of this. This is really awful. Makes the other pain seem small.

    Will start an anti anxiety med to deal with too much on the plate with this problem, COVID bad issues, and worse. I dont know how things can go from bad to worse,but they do. Things really do fall apart.

    Have been able to pretty much keep weight on by shoveling calories in, but there are days I cant eat enough.

    I seem to remember ANN dealing with Gastroparesis like illness.

    ANd it mysteriously receded but. I cannot recall how that came to be?

    Oh Sunshine, I don't know what to say. There is nothing worse for me than nausea, and to have it last for so long is really bad. When you say you are dealing with COVID issues I hope you or someone in your family is not suspected of having contracted it.

    Ann did deal with some symptoms that were like Gastroparesis, but she could not get food down as I recall. She will be along to tell you about it. She did not have it. I have someone I know who does have it and they have lost a lot of weight, but they also have other problems. However, they have an appetite and eat what they can.

    I am so concerned about you and wish there was something we could do to help you. I am having anxiety regarding COVID and cannot focus to read my books, but I do not have the other things you do.

    Knowing you Sunshine, I am sure you have checked out all your medications to see which ones, if any can cause nausea. I hope your Doctors are being very responsive to your needs right now and realize you have been suffering so much for so long. You just have too much going on in your body and probably one thing leads to another.

    You have fought long and hard and I have no doubt that you will continue to do so. Maybe they will get to the bottom of this latest and newest development and help you to feel better. I am praying that will happen soon. You are strong and remember there are so many people who care about you. We miss you on the forum when you are unable to come on. We understand, but still we miss you.


      Hi Sunshine, so sorry to hear that you are miserable with nausea. I hope the testing leads to help for you.

      You are right about me having trouble eating enough. I could only eat a small (literally a cat sized bowl) every four to six hours. I did have an appetite and did not have nausea. I could not keep up with the weight loss.

      My gastroparesis test was probably normal but I couldn’t eat all of the prescribed food.

      I did not have pain but discomfort in the left upper quadrant within minutes of eating. I never got any diagnosis but my liver functions were 3 times normal.

      I hope you get a break as you have been suffering so long.

      There comes a time when silence is betrayal.- MLK


        ANN: how did Yours resolve. Was it just slowly over time?
        They hopefully will learn more from this test, or it will lead to more testing.
        Virginia, your words of support mean the world to me. Thank you.

        I can eat breakfast and dinner. The rest of the day is nausea city.

        I had started a new 3000 IU D3 per doc order. So I stopped that 10 days ago in case it caused the nausea as its not FDA regulated. So far, no change.

        The nausea was the straw that broke the camels back. I was managing all of the pain, loss of friendship etc, loss of surfing, loss of reading, was getting used to the isolation, except when DH was at work.

        But the COVID and a major betrayal of my family by a local person, pushed me over the brink and I became anxious. I will start Buspar after IVIG on Wed so I dont confuse any SEs from the BUSPAR with IVIG or with the tests on Tuesday.

        I treated myself to a new pair of summer pjs via amazon mail. So there too.

        I would be lost without my DHs caregiving: He does all the shopping and has learned how to shop at the grocery store: it is an art, as many women know, but didnt know they knew until they depended on others to do it. I can still cook a nice supper for him, which I feel good about.

        I often cannot speak on the phone due to nausea, but I can type.

        I can swim.

        I will post when I can. Sorry I cannot be more giving at this time to this precious board, especially since Rose lost her Jim...

        I am reading The art of happiness by Dali lama on my kindle. That I am grateful for. Still trying to figure out how to use the kindle. Frustrated by tech!!


          Hello Sunshine,

          My symptoms did get some better over time. I lost 20 of 27 pounds from 9/28 until 12/31. I was miserable and often hungry. I dreamt and daydreamed about food and recipes.

          The fullness and discomfort associated with eating got worse as the day wore on. Breakfast best and supper worst. I always went to bed w the nagging discomfort and fullness and sometimes woke up with it. It seemed to me like a motility problem.

          It hasn’t gone away but I can eat much larger quantities tho not large and I can eat more often. The MS Specialist thought that if motility was the problem, I would be much sicker.

          I don’t know if my experience can help you. I did not have nausea or diarrhea/constipation.

          Thank you for posting and letting us know how you are. You are doing a lot for someone in your situation. It helped me to have many diversions. Night was the worse - too much time to worry. NPR was a help but would not be in these CoVID times.

          Blessings to you,
          Last edited by stillstANNding; 05-16-2020, 08:59 AM. Reason: Edited to add: I also bought new PJ’s from Amazon.
          There comes a time when silence is betrayal.- MLK


            I read that MS can affect the vagus nerve that controls part of the stomach. I think it results in a motility problem, and a problem with feeling full too quickly, and maybe not moving food into the intestine. Or something like that.

            No treatment was mentioned in that article.

            Thanks Ann for taking time to type it.


              The GI said there were two medicines. I think one is erythromycin, which is cheap and I am allergic to. And the second one had very serious side effects that I declined to accept.

              There comes a time when silence is betrayal.- MLK


                Originally posted by stillstANNding View Post
                The GI said there were two medicines. I think one is erythromycin, which is cheap and I am allergic to. And the second one had very serious side effects that I declined to accept.

                DId they think it was an infection, hence erythromycin?


                  No, not infection. Erythromycin, they said, promotes motility. I’ll look for a reference.

                  Edited to add:
                  This recommends Azithromycin over Errythromycin:

                  Only registered and activated users can see links., Click Here To Register...

                  Neurogastroenterology, who knew?
                  Last edited by stillstANNding; 05-16-2020, 01:28 PM.
                  There comes a time when silence is betrayal.- MLK


                    ((((((Sunshine)))))) ~

                    You have so many different issues to endure, and I'm so very sorry. Jonathan and Michael had slow motility and other gastric issues. I have some thoughts, which will be questions for your consideration.

                    Can you think of anything that changed in your life, diet, or medication, prior to the onset of nausea? Stress can cause any kind of physical problem. I find it difficult to eat, when my stress level is at its peak.

                    Have you tried eliminating different kinds of food as a culprit? Many years ago, I suddenly developed a severe intestinal intolerance of egg yolks. I whittled down the possibilities, until I realized that when I ate yolks, I felt horrible. It took me longer to realize that red meat was wreaking havoc on my intestines and gut.

                    Are you bloated, gaseous, filled with fluid in your gut, have heartburn/indigestion?

                    Sometimes gastric issues can be related to gallbladder and even UTIs.

                    It is true that the brain and the gut are directly connected. I remember discussing this topic on the old Child Neuro forum in the early 2000s, as most of our children have gastrointestinal issues.

                    Here are a couple of articles on the brain/gut connection:

                    Only registered and activated users can see links., Click Here To Register...

                    Only registered and activated users can see links., Click Here To Register...

                    You are so sweet to think of me and Jim. I'm managing okay, because I'm being supported fully.

                    I give thanks for your devoted, loving husband, and that you are still swimming and cooking. You are an amazing, strong woman, an overcomer. Those, who have abandoned you, are the ones, who have lost. Don't let them take your energy. Focus on the ones, who love you, support you, and pray for you. They're right here every day, and there are many others in your world, who are with you too.

                    You are never alone on your journey, Sunshine. You are loved and treasured. Lean on us, the ones, who love you and understand, as well as we can, how challenging every day must be for you. You can type. We're here to read and respond.

                    Praying that the tests will reveal answers and a simple solution ~

                    Blessings upon you ~

                    Love & Light,


                    *Virtual Hugs Are Germ-Free!
                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.


                      Oh Sunshine, I'm so sorry to read you are facing yet another very, very challenging problem. As others have said, you are a brave and valued member of this community and we will always stand by you and be here for you.

                      Since erythromycin was mentioned in a previous post, I do want to tell you that at one time, long ago, I had a very bad experience with erythromycin. I was prescribed that med after having a root canal, as I recall. I think it was on the 2nd day of taking it when my stomach started hurting and I felt nauseated. By midnight I was vomiting and curled up in a ball on the bathroom floor writhing in pain and crying, as my husband rushed to the hospital, which was the only place open at that hour of the night that we could get a different prescription drug to counteract the erythromycin. I will never forget that dreadful night and will never take that drug again. I have since learned that stomach issues are a common problem with the med which is why erythromycin should never be taken on an empty stomach. I didn't take it on an empty stomach but sure did have a bad reaction anyway. I am allergic to penicillin also, so that pretty much limits the number of antibiotics I can use.
                      Not trying to frighten you, just a heads up.

                      I hope that this new issue is resolved soon, and you can focus all your attention on addressing the other nasty challenges that plague you.
                      You are in my thoughts and prayers.

                      (((gentle hugs to you)))

                      Joan aka nuthatch


                        :) You are in my prayers Sunshine/ Thanks for checking in. Jeanie :)


                          So sorry you're having these problems, Sunshine!

                          In recent years--the last 10-12 years or so--I've noticed that I have a problem like that but never had anything like it before. If something happens to upset me--and it doesn't take much any more to bring this on--I lose my appetite and have diarrhea, sometimes for the entire day, sometimes even longer. Sometimes I can get the better of it as the day wears on.

                          The big problem with it is that I get weak so very fast when I don't eat. But with me this is so clearly related to stress (and often to overdoing) that I try really hard not to let myself feel the stress. I can almost will it away sometimes--not let whatever it is bother me.

                          That isn't as hard as it sounds. All I have to do is remind myself of what is going to happen to me if I get too stressed--the nausea/appetite loss, the diarrhea.

                          I'm not saying this is anything like your problem--but hope you can keep the stressful situations to a minimum.
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.


                            Sunshine, I forgot to add that my friend who definitely does have Gastroparesis does not get nausea with it. He just can't get food down, or at least it is very, very little. He is 6'2" and what would make a meal for him would hardly be a snack for me.